On May 5, 2023, Roya suffered a cardiac event while coming home from kindergarten on the school bus. She was diagnosed four days later with mixed type (dilated, hypertrophic, and restrictive) congenital cardiomyopathy. She was referred for care to the Children’s Hospital in Minneapolis where she had echocardiograms, a cardiac catheter procedure, and was given a heart monitor to wear.
She wasn’t initially given any further treatment, but in July she developed worsening nausea, fatigue, shortness of breath with activities, and intermittent chest pains. She was admitted to Children’s again and started a round of an infusion drug called Milrinone followed by some oral heart failure medications.
She initially responded well to the drugs and was even able to play some tennis and soccer until the second half of August when her symptoms came back.
She was again admitted to Children’s where she had her second cardiac catheter procedure and spent a week being monitored.
The last week of August her care team was switched to the Mayo Clinic and her oral medicines were changed and added to. During a visit to Mayo in the end of October it was determined that she should be listed for a heart transplant due to concerns of severe restrictive cardiomyopathy.
In mid-November she went to the Mayo Clinic to be evaluated for her heart transplant and at that time was placed in the Pediatric Intensive Care Unit to have a PICC line procedure so that she could receive a constant IV of the heart failure medication Milrinone.
She was discharged and able to return home on the transplant list, wearing her IV in a backpack so that she was able to attend school while she waited for her new heart.
Just after New Years Roya was admitted back to the Mayo Hospital for decreased appetite and increased fatigue. She’s now staying as an inpatient at Mayo long term until her new heart comes.
Roya has had constant trauma from painful bandage and dressing changes, IV pokes, fasting for procedures, and not feeling well. However, she has always been a little fiery, even as a toddler she was fierce when she needed to be; we feel that this character trait has really helped her to remain positive, brave, and strong despite all that she’s faced.
Roya dreams of singing and acting someday and of studying ancient Egypt in college. She is kind, silly, loves to laugh, and when she has the energy, she loves to do most sports.
Right now we are praying for her to receive a new heart while also praying for the family who will be donating a heart to her after losing a child.
Please consider donating to COTA in honor of Roya to assist with transplant-related expenses. Make an online donation by clicking the GIVE button, or call COTA at 800-366-2682 to donate over the phone.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.